Jump to content
ACN Latitudes Forums
  • Announcements

    • Administrator

      Forum Community Guidelines

      Forum Community Guidelines

      Our forums provide support for people dealing with neurological and related issues. Everyone joining this community should find it a safe haven where they are treated with respect, civility, and understanding.

      Your agreement as a user: You agree that you will not use this forum to post or send messages that are knowingly false, inaccurate, abusive, vulgar, obscene, profane, or sexually oriented. Text should not be defamatory, harsh, accusatory, intimidating, slanderous, an invasive of a person's privacy, or violate any law. Doing so may lead to you being banned (and your service provider may be informed). The IP address of all posts is recorded to aid in enforcing these conditions. You agree that the webmaster, administrator, and moderators of this forum have the right to remove, edit, move, or close any topic at any time should they see fit. You agree not to post any copyrighted material unless the copyright is owned by you or by this forum/website. Advertisements, solicitations for services or business, most research requests, as well as any type of research on the content of these forums by third-parties, are prohibited. Unauthorized use or reproduction of posts on these forums is not allowed. Any user who feels that a posted message is objectionable is encouraged to contact an administrator.

      Announcements, media requests, and research requests

      These need administrative approval. Please send to an administrator before posting.

      Inappropriate content

      Members are here for support and education. Check the list below for types of posts that are not allowed: Advertisements Flames or messages meant to intimidate, criticize, or harass others Threatening or obscene messages Messages discussing a private message (PM) from others Copyrighted materials that you do not own the rights to, except educational or research articles Messages containing or condoning illegal acts; also messages of suicidal intent Direct discussion of politics (please avoid) Specific or strong religious views Requests for donations for other organizations unless approved by administrator Solicitation of members for research, media projects or other projects, without prior administrative approval About links for other websites:

      You may have links in your profile as long as they do not violate our guidelines (above). Links within a post to online resources and articles are generally OK. Do not post links to other forum communities with the aim of soliciting other members to that community, thereby taking them away from this community.

      When a guideline is violated

      If you violate a guideline, you will be contacted by PM or email. We will try to resolve things amicably. We don’t like to ban members and rarely do, but this is an option.

      Updated March 19, 2010
    • Administrator

      Disclaimer and Privacy Policy


      The ACN Online Discussion Boards are intended to provide helpful information and allow sharing of ideas. Postings should not be considered as medical advice. All users should consult with their healthcare professional for questions or medical decisions.

      Users must accept full responsibility for using the information on this site and agree that ACN, Latitudes.org, advisory staff or others associated with the site are not responsible or liable for any claim, loss, or damage resulting from its use. Please remember that we do not actively monitor all posted messages and cannot be responsible for the content within. We can also not guarantee that access to the site will be error-free or virus-free.

      Reproducing any document in whole or in part is prohibited unless prior written consent is obtained. Web pages may be shared when passed on with the URL.

      Information posted on the Forum is done so voluntarily and will be accessible to the public. The material posted may be used by ACN (without the identity of the user) for publications or educational purposes. No compensation will be provided for the use of this material.

      Note: ACN is providing this service with the expectation that users will abide by the guidelines provided. We reserve the right to monitor postings and remove or refuse inappropriate and questionable material, as well as remove dated postings at our discretion, for any reason.

      Privacy Policy

      When you register with the Forum, you need only give your email address, which is available only to the Adminstrators and will not be shared on the Forum site or with others in any format. Forum users will see only the user name you choose to provide.

      Our web server collects and saves default information logged by World Wide Web server software. Our logs contain the date and time, originating IP address and domain name (the unique address assigned to your internet service provider's computer that connects to the internet), object requested, and completion status of the request. We use these logs to help improve our service by evaluating the "traffic" to our site in terms of number of unique visitors, level of demand, most popular page requests, and types of errors.

      You have the option of enabling to save your username and password data when you are accessing interactive parts of our websites, to allow your web browser to "remember" who you are and assist you by "logging on" without you having to type your username and password repeatedly. This is known as a cookie and it can be enabled or disabled in your control panel. Cookies are small files stored on your computer's hard drive that are used to track personal information.

      Except for authorized legal investigations, we will not share any information we receive with any outside parties.

      Updated March 19, 2010


  • Content count

  • Joined

  • Last visited

  • Days Won


Sirena last won the day on May 14 2017

Sirena had the most liked content!

About Sirena

  • Rank
    Advanced Member

Profile Information

  • Gender
  • Location
  1. Rothman?

    If you are at the food refusal stage—she may be too sick to get the most. And imho, you can still learn about exposure response therapy and implement the basic idea at home (small, safe incremental exposures to things that raise anxiety. We had progress on some fronts but not all bc we hadn’t hit all the infections.
  2. Refusing to bathe, ideas?

    I have used this little trick successfully a few times. Fill tub with warm water and bubbles. Take kid into bathroom while talking about something else. Keep talking to him while taking off clothes with no reference to bathing and then put him in...so basically no discussion about it just do it...another twist...when kid said didn’t want to then I said okay you just have to stay in bathroom for five minutes. You don’t have to get a bath (with warm bubbly tube already filled) and I set a timer, walked away and closed the bathroom door. Kid put himself in tub before timer went off—lol. We have to get creative! Another comment that worked for gaming kid was to say “oh no— your at low hygiene! Better get a bath quick!
  3. We did t&a recd by Dr L with ds at age 6. Gave us three weeks of relief and then an upper respiratory infection put us right back in the flare zone. Eventually we did igenex lyme work up for tick born infections and that treatment is what has gotten us traction. (And he did have strep at onset too). So in hindsight I wish we had done a full panel of tests for Lyme (Dr L doesn’t typically) before tonsillectomy but they may have needed to go anyway.
  4. Also get Horowitz lyme book..and yes lyme & co can run through families—right now my Dh, ds and dd are all dealing with it and DS has pans. The sooner you get on it the better. Look for another land or convey seriousness and pans symptoms to land and ask to be put on the cancellation list to get in sooner. Stomach and swallowing issues sometimes occur with anaplasmosis...
  5. Lyme tests?

    You can pull the lyme panel tests from the igenex website. Note that it may be out of pocket depending on insurance. You will want lyme IFA, western blot, and serum pcr tests. You should also test for the co-infections especially Babsesia (do antibody, pcr, rna fish tests) and Bartonella panel. Mycoplasma also commonly an issue. Medical diagnostics laboratory also has a good reputation and is more often covered. The IMPORTANT thing to know is that many of the typical Lyme &.co tests are based on antibodies and in tick borne illnesses the immune system can be down regulated so that you don’t make the needed antibodies—and so tests are negative even though the infection is full on raging.
  6. Yes-sounds like PANS complications from tick borne infections and yes you can be strep positive with out symptoms. You might look into using Alinia in your protocol —but get a detox support in place first. Dr Horowitz’s books are good guides for the big picture.
  7. So autoimmunity is in play...have you screened for food sensitivities? Any IVIG?
  8. changes in urination

    Sometimes extra calcium (like Oscal or similar) seems to calm down frequency.
  9. Perhaps food sensitivities? Our SPD /bartonella kid also has strong food sensitivities so gluten and dairy seemed to be culprits...
  10. Any PANDAS kids have no remorse?

    According to Dr. L, many times kids can't evening really remember the details of the rages. Please remember that it is their "brain on fire" and at some level it is beyond their ability to control it. Thus, looking for remorse is misplaced because it presumes that they made a choice. Kiddos often don't want to talk about it because it is scary and upsetting.
  11. T&A got done near onset and there was inflammed tonsil and lymph nodes. Post surgery we had a 3 week reprieve and then it was back full force. In hindsight, I wish we had done the full lyme & co-infections work up first because that ultimately seems to have been the driving culprit (Babesia duncani in particular).
  12. Bartonella flare - help!

    You might try a couple days of Tagamet for the itching. Also check for food sensitivities and adjust diet before trying Abx or antimicrobials again. Also check IgG levels. One big question you need to answer is whether your son's immune system is compromised--which ironically can happen even while creating autoantibodies. Limeade with xylitol has been a favorite detox for headaches for us.
  13. If lyme and strep—make sure that there aren’t other tick borne co-infections at play. Check out lyme book by Horowitz as a good overview.
  14. Sound like PANs or PANDAs?

    Better make sure bartonella, Lyme, Mycoplasma, and c. Pneumonia aren’t also on board.... Get inflammatory markers checked... learn about Moro Reflex integration...seems to have been effected which we see with one of ours. You will likely need BOTH an infection fighting strategy and an immune system modulating strategy. Gettting well will be more important that school—which may be too stressful. I recently found a program that helps adults help kids self-regulate which I think will be helpful with the knowledge that there brains are under attack and that they (and we) need lots of support. It’s called conscious discipline and they have a “safe space” concept that might be a tool to try to teach. Lastly, if you aren’t doing it already—try to track temps over the course of the day. We found low grade fevers linked with behaviors and ibuprofen helps some. We are 2.5 years in and just last month starting to see the light... Hang in there.
  15. My advice—get to a lyme literate doc, they are more familiar with Mycoplasma treatment.